Wednesday, March 28, 2012


Well, baby boy, here we are. It's been a year since you turned two, a year since I sat in a doctor's office, on just this side of hysteria, hearing my own voice ask as if from a distance, "Is there any chance at this point that he will develop normally?"

And that doctor - that @#$%* doctor - replying matter-of-factly and oh-so-casually, "No."

A year ago, we packed up and drove to our first autism event - an annual 5K. Just before the runners lined up, the coordinators of the event said a few words to commemorate the event, to remind us why we were there.  The speaker rattled off statistics - a staggering 1 in 110 - then asked for a show of hands.

"If you or someone you love has autism, please raise your hands in a moment of solidarity.  Then look around you, because this - THIS - is your community."

All the hard moments in my life up until that point couldn't compare to that one, baby boy.  That was the day that I stopped being "just" a mom, and became a mom that belonged to - and NEEDED - that "community."  It petrified me.  So much was riding on every decision I made from that point on.  Would I fail you?  Would I be able to give you what you needed, when you needed it?  How in the world would I figure out where to go from here?

I ran that race with everything I had, baby boy.  One foot in front of the other, mile after mile.  Pushing like it would do me a d*mned bit of good.  I rounded that last stretch, crossing that finish line and searching for your precious face, finally finding it among the crowd.  It was turned away from me, oblivious to the excited instruction from your grandmother to "Look, C!  Look!"  You didn't know what was going on, but the crowds and the inability to take off and run as you so obviously wanted to meant nothing good to you.

That was the day I met the people at your therapy center.  Just days before, I had signed the paperwork to send you there with absolutely no idea how we were going to afford it or juggle our work schedules, but knowing that somehow, some way, we must.  As we stopped by that booth, and I attempted to place faces with names and voices heard over the phone, I had no idea how our life was about to change.

A year ago, I knew nothing about autism, baby boy.  But you taught me.  You taught me what it was, and what it was not.  It was hard work.  It was patience.  It was consistency, and it was bottomless wells of love.  It was not isolating, it was unifying.  It was not cruel - it taught compassion, and brought about compassion in others.  It was not the death of any dream - it simply bore new ones.

A year ago, I would not have recognized the child you are today.  You have taken on every challenge thrown at you, and tackled it to the ground.  In the process, you have changed not just yourself, but everyone around you, making your daddy and I better parents - better people.  You have made your brothers better siblings, and planted the seed of compassion and patience and empathy in them, forging the way for the next generation.    Every time I hear big C patiently instruct you on some new mischief he's decided to involve you in, or watch K sit down on the floor to play with you like there's nothing in the world he'd rather be doing, I struggle to hold back tears of gratitude.

I'm gonna run that race again this weekend, C.  I'm gonna to give it all I've got, but this year I'm going to know what I'm running for.  And when they ask for that show of hands, my hand won't go up trembling with uncertainty this time.  It's going up with pride.

A year later, I flash back to that doctor's words.

"Is there any chance at this point that he will develop normally?"


She was right, baby boy.  You are so, so much better than normal.

Thursday, March 1, 2012

Mommy's not as smart as she thinks

So I know it's been forever since I've posted, and I really have no excuse, other than IT'S EXHAUSTING BEING ME.  To summarize how things have been going, Teenager has decided that he's had enough of this never-being-sick thing and decided to compensate for all of those I-don't-even-know-what-our-family-doctor-looks-like years with a bad@ss case of kidney stones.  Which has resulted in the need for one, going on two procedures now.  Meanwhile, big C has embarked on some diabolical mission to discover just where Mommy's breaking point is and then dance merrily along the edge.  For the record, he's still in one piece.  So far.

Little C continues to alternately amaze and terrify me with the extent of his progress in therapy.  Some days I'm so proud I could burst, others I am seized with holy-crap-he's-smarter-than-I-am-and-what-am-I-going-to-do panic.  We still have our rough moments (hello, hair salon), but overall, he is laughing in the face of "reasonable expectations of progress."

We also still have our moments of hilarity somewhere in between.  Like practicing our "Negation Mand" protocol - I offered him a pea I was absolutely sure he would not want, in order to prompt him to say, "I don't want it."  Instead, he took it, tried it, then spit it out and looked at me as if I'd just tried to poison him.  So I (reasonably, I thought) assumed when I offered him a piece of similarly despised carrot, he would loudly declare, "I don't want it."

"C, do you want a carrot?"  I asked.

"YES!" he answered, with a delighted smile.

I waited with baited breath as he TOOK THE CARROT...

Maybe I should have been more clear.

Little C: 1
Mommy: 0

We are also practicing "Attention Mands"...namely, getting him to preface requests with "Mommy..." in lieu of whining in order to get my attention.  The first stage of a new protocol is always the hardest.  For me, that is.  In order to make the connection, I pretty much HAVE to give him whatever he asks for when he asks for it correctly.  The first day, I am usually giddy with excitement that he is FOLLOWING PROTOCOL and happy to do this, but by the end of the week, I'm all "what is that noise, and WHY WON'T IT STOP?"  We're still in the early stages of our new protocols, but after tonight's incident, that phase is fading fast.

Little C: Chair.
Me: (ignoring him)
Little C: CHAIR
Me: (ignoring him again)
Little C: Mommy.
Me: Yes, C?
Little C: PUT ME [in the non-booster -seated, kitchen] CHAIR

This is how it's supposed to work, only eventually he's supposed to START with Mommy.  He's still being stubborn about that part.

So, after receiving his prompt and having the she-has-to-do-what-I-want lightbulb go off above his head, he demands to be moved from chair to chair, playing happily for roughly 5.2 seconds after each rotation.  What I don't realize is that he's gradually moving me closer and closer to HIS chair.  The one he eats in every night.

So, after four rotations of, "Mommy.  Put me chair," he lands in his chair.  Then he happily demands, "Mommy. FEED ME CHIPS."  I don't know when I've seen him smile bigger.

Little C: 2
Mommy: Somewhere in the negative

*I have so much more to tell you, including a trip to the mall playground, at which I may or may not have cried and scared every mom surrounding me, and the (thankfully successful) search for this.  But (thank God) it's bedtime, and I gotta go.  BEDTIME IS PRECIOUS IN THIS HOUSE.